Tuesday, 2 July 2013

On Thalassemia

Wikipedia says,
Thalassemia forms of inherited autosomal recessive blood disorders that originated in the Mediterranean region. In thalassemia, the disease is caused by the weakening and destruction of red blood cells. Thalassemia is caused by variant or missing genes that affect how the body makes hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen. People with thalassemia make less hemoglobin and fewer circulating red blood cells than normal, which results in mild or severe anemia. Thalassemia can cause significant complications, including iron overload, bone deformities and cardiovascular illness.

In Northeastern India alone, there are 10,000 patients diagnosed with thalassemia. This constitutes only the people who are aware. There are many out there who do not even know what thalassemia is. People die every year from this; some know about their illness while some are oblivious. A thalassemia sufferer needs fresh blood every 2 weeks. The only permanent treatment is bone-marrow transplant which costs up to 12-15 lakhs INR (~20,120 $). In a country where most people earn less than 2 lakhs per year, is it possible to cure such an illness? Isn't welfare of the people the Government’s business? The Indian government hasn’t anything to save these people. The worst part is that Indian Government does not recognize thalassemia patients under the Physically Disabled (PD) category. According to the Persons with Disability Act, 1995, the following categories are considered to be physically disabled – blindness, person with low vision, hearing impairment, loco motor disability, mental retardation, leprosy and mental illness. Another category ‘disability’ was included in the NSS survey later. But nowhere can the thalassemia patients fit in. Due to the neglect of a particular group of people called the ‘government’, the innocent people of the nation suffer.

Most of the government blood banks do not have a pathologist; how do they manage to store blood which they claim to be pure? Moreover, free medicines are not provided according to certain schemes. A small amount of free medicines for hardly 15 days or a month are provided every year. The categories included in the PD quota have problems in certain body parts but, thalassemia patients have problems in their gene function. Technically, they are the ones who need immediate care and attention. They should be included in the PD quota at the foremost. But they are ones who are the most deprived.

But as it has been seen, the cry of the people goes unheard in our country. If the rich can fill their pockets (be it illegally too), then ‘all is well’ in the country. It is indeed time for a revolution; a new dawn should be brought in to saveguard the nation’s future.

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